No glutathione, high cysteine, intolerance to supplements- suicidal

[NotThisGuy]

Hi,
Im pretty worse these days...
I have low blood pressure (for a long time), orange urine (i guess no bile flow), feel like dying, suicidal depression sometimes blood in urine, without any known cause. (i believe its nephritis), shortness of breath, anxiety.

The strange thing is: I can't take any electrolytes. Every electrolyte I try gives my overdose symptoms.
Somethings very wrong with my kidneys (and liver), but blood panels are ok, so no one cares.

I believe its low ATP (confirmed by lab) and low glutathione.
Everytime I had an ATP boost by supplements the electrolyte intolerance got better

To my history: I'm sick for about 10 years, but got significantly worse after exposure to mercury and lead.

This left me with huge food intolerance (pretty much Im eating only potatoe, olive oil and chicken breast for 1.5 years).
Alongside with histamine and MCAS. I had trouble with MCAS and histamine before, but not nearly this severe. I also have MCS.

I can't take any supplements because even tiny doses make me worse.
I used to take lots of supplements 1 year ago but stopped tolerating them after I started methylfolate, Q10 (not the reduced one) and selenium.
Mild intolerance started with methylfolate and Q10

Selenium crashed me totally. (pale, anemia, anxiety, panic, no appetite, intolerant to all supplements)

The only good phase after that, where I also tolerated supplements again was when I took B1.
Had 2 very great days and 2 good months. Then it stopped working and I was worse than before.

After that copper seemed to help for a while (could only tolerate 200mcg a day). I supplemented it for about 3 weeks and now it only makes my depression worse.
But I'm pretty sure I was deficient, because my blood levels had an slight increase in MCV and decrease in MCHC. That never happened before after my exposure to heavy metals.
Also my thirst decreased (I was drinking 6 liter water before I took copper, now Im down to 3 liter)

After the copper success I took some tyrosine, because I thought maybe low norepinephrine was causing my low blood pressure.
(again only tiny amounts). The first 2 weeks were great! Some improvement with all my symptoms.

But then suicidal depression hit me. I had to drop the tyrosine since my mood got very dark shortly after taking it. (alongside I took some copper, but not frequently and only little dosage and also s. boulardii)
I don't know which of them made me so much worse. I read that boulardii contains ALA, but that it's in a complex and doesn't get absorbed very well. Might this be why Im so much worse? Because it startet chelation?

The only thing right now that keeps me alive is the sun.

I figured it could be the IR light of the sun, which is making me better so I bought a an NIR bulb (NO SAUNA).
I pointed it on my liver for 15 minutes and that night I thought I would die.
Huge thirst that didn't went away. Brown urine, orange urine, red urine (blood).
I'm still recovering from it, that was 3 days ago.

I guess the IR made inflammation worse. Now I can't even tolerate the sun that good anymore.
Maybe im depleted in glutathione? Maybe my bileflow completely stopped? I dont know.
The sun gives me now similiar reaction like the IR-lamp did, but it improves my breathing troubles!!!! and my depression. So there is something else in the light I have to go for.

I did some lab tests and few things are concerning me:

Borderline low cortisol

low testosterone (I read that this can cause depression)

Thyroid is OK. only RT3 is borderline high

very low ALA (lipoic) levels

borderline low copper (before I started taking copper)
borderline low ceruloplasmin

borderline low zinc

borderline low molybdenum

high magnesium (went down after I took copper, still too high, but borderline high)

potassium, calcium, natrium all ok. But natrium is borderline low.

Vit. D: 24ng/ml (19-72 normal)

B12: borderline high in RBC

Iron: borderline high in RBC, but low ferritin and free iron.

low uric acid and low urea.

high bilirubin.

high IgE

high sIgA (stool sample)

methionine: 15 µmol/l (6-40) - little lowish
glutamine: 666 µmol/l (470-758)
glutamic acid: 41 µmol/l (28-92)
glycine: 289 µmol/l (120-387)
taurine: 203 µmol/l (57-228)
cysteine: 75 µmol/l ( 33-82)

All other aminocadis are lowish. The ones listed above where those I supplemented last year. So maybe thats why they aren't low.
I added the full list as PDF.

Now the question is: Why is my cysteine this high?

What is the missing cofactor to make cysteine to glutathione?
I googled and found glutamic acid, which lowish.
Now Im afraid to supplement it due increase of depression or anxiety.

Also I thought glutamine can convert to glutamic acid.

If I try to take zinc I get instant low blood pressure, anemia with breathing troubles (like my lung isn't stretching enough). This only goes away with cortison. (I take ACE but even there tiny dosage lowers my blood pressure).



I hope someone can suggest something I can do about my situation.
Thank you very much.

EDIT:
UTI is ruled out.
Also I dont think it is cancer. The kidney problems started with lead exposure.
(I had a friend with me in the room and he also has the same problems/symptoms like me, since that day)

Homocysteine: 7 µmol/l (anything <10 is ok)

 

[Critterina]

To be honest, my friend, this seems more serious than something us amateurs should try to address for you. There is a forum for finding a good doctor here. Make a post with your geographic region, asking for a good doctor - that's my best recommendation for you. If acute lead poisoning is the main concern, which is how it sounds to me, that's the kind of doctor or practitioner you'll need - someone who can address that. Best wishes my friend!

 

[NotThisGuy]

Hi, its not acute.
The lead thing was 2 years ago.
Mercury was 4 years ago.

I will post there to look for a good doctor.
But I'm from germany and I'm afraid we dont have really much of them.

Edit: I also have jaundice....
My eyes are a little bit yellow.
Dr. are really no help at all....

 

[PinkPanda]

The first thing that comes to my mind is vitamin B5. Vitamin B5/ Pantothenate requires cysteine for activation to coenzyme A. I don't know if a deficiency could maybe raise cysteine levels. I had too high cysteine at one point and was taking a few vitamins but not B5.
Also, B5 supplementation can increase glutathione levels.
https://www.ncbi.nlm.nih.gov/pubmed/15225628

I think copper and B5 might interact too. Vitamin B5 deficiency is associated with high blood copper and taking B5 might improve your copper binding/utilization.
Have you tried vitamin B5?
Are you currently taking any other vitamins?

I don't know how tyrosine might have caused depression, maybe by raising noradrenaline/adrenaline?, but copper toxicity is associated with all kinds of physical and mental symptoms. I imagine the copper could have worsened the situation.

Liebe Grüße

 

[NotThisGuy]

I've read about nitrotyrosine. Maybe that happened?

No I'm not taking any supplements, because they make me worse.
So basically I should try B5 and not pantethine (active b5)?

But what else requires activation for B5? Hopefully nothing im deficient in like ALA.

Thanks for you help.

 

[PinkPanda]

I had better experience with pantothenol or pantothenic acid than active b5. I felt the active b5 depleted other vitamins minerals more.
You also need FMN (active vitamin B2) for activation.
If you're german, here:
https://de.wikibooks.org/wiki/Biochemie_und_Pathobiochemie:_Druckversion#Pantothenat-Stoffwechsel

B2 helped me for depression but after a while it increased anxiety. So I think it can have a bit adverse effects. It increases MTHFR function, so if you have homocygous MTHFR mutations it might be sensible. More folate can increase neurotransmitter synthesis.
B2 also helps regenerate glutathione. But it can also increase serotonin breakdown as a MAO cofactor.

So if, I would start b2 carefully and in combination with other vitamins. Also, sublingual hydroxocobalamin (vitamin B12) is a bit of a basic for me at the moment.

 

[NotThisGuy]

B2 lowers my blood pressure too much.

This site is helpful.
It says high bilirubin blood levels are an indicator for low glutamate. Maybe I will try the glutamic acid. Hopefully its the missing link.
Still don't unterstand why my body isnt just using the glutamine....

Maybe I will also try some acetyl glutathione since Im getting to the point where I have nothing to lose anymore.

 

[PinkPanda]

I would think about b5, maybe your doctor can test for deficiency or something..

 

[pattismith]

B2 lowers my blood pressure too much.

This site is helpful.
It says high bilirubin blood levels are an indicator for low glutamate. Maybe I will try the glutamic acid. Hopefully its the missing link.
Still don't unterstand why my body isnt just using the glutamine....

Maybe I will also try some acetyl glutathione since Im getting to the point where I have nothing to lose anymore.

Hello,

I'm so sorry to see that you are such in pain, with no help.

I do think that if you has a jaundice, you should go to your doc, because something must show in your blood.

You say that your blood works are OK, but that you have blood bilirubin and nephritis. These two problems would be easy to check in a blood work, so I really feel you should stick with your doc and make further investigations.

Take care, and keep us updated

 

[Markus83]

If bilirubin is high and eyes are yellow together with itching, this sounds like serious liver problems. There is a genetic disease called Morbus Meulengracht which comes with high bilirubin, which is harmless. But I'm not sure if it comes with itching as well. But could be possible. Were your liver enzymes normal? And if you had blood in urine and a UTI was ruled out - did you see a nephrologist? Who diagnosed a nephritis? This is serious, and I cannot believe that the doctors will leave you without treatment. Do you have a standard blood work up from a normal doctor which you can put in here?

Belonging the lead poisining: this can be diagnosed quite easily (lead in whole blood and urine) and also treated. But you have to check the "standard" things first. For me it sounds like you're doing a bit self diagnosing and self treatment without very much knowledge. You can do that, but see your GP to rule out other causes first.

 

[NotThisGuy]

Yeah.. got to love posts like this.
Registered in June 2017... checks out...

I was in the ER and they wanted me to stay in their psychiatry.
Dr. said my symptoms are all psychological.
I would be glad if I didn't have to self diagnose, but there is no other way. No one else will do it.

I dont think you know very much about heavy metal toxicity @Markus83.
Thanks for your help anyway.

My liver enzymes are slightly too high.
Bilirubin is too high.
uric acid chronic low (fanconi syndrome i guess)
mcv slightly lower
mchc slightly higher

I think my depressions are from liver overlad and limbic system problems.
I have low testosterone and exposed my testis to the sun today.
I dont know if it was this that fixed me today but I feel way better.
Unfortunately there is no sun for a whole week..... that will be a hard week....

I read about limbic system related depression and that might be it.
My depression symptoms started when I was 17 and had a huge thick blue lymph node.

Anyone know something else how to improve limbic system depression besides fixing sex hormones? Without killing what is overloading the limbic system please. Cant handle any die off right know.


I also found out about fanconi syndrome. That pretty much explains my weak kidneys (while lab parameters are all ok) and my intolerance to electrolytes.

But according to Dr. its all psychological.
They put me on IV NaCl and Dr. was even there and could see on the display that I got arrythmia from it !!!

Right now I'm doing a 24h urinary copper test for wilson. We will see.....

 

[Markus83]

Concerning heavy metal toxicity you might call "Labor Bayer" or "MLHB Bremen" (use google). I'm pretty sure that they can point you to a Doc familiar with heavy metal toxicity in your region.

Did you see a gastroenterologist because of your liver tests? There are several liver diseases that must be ruled out before sending someone to psychiatry - if at all. If you think that you have electrolyte disturbances you might consider this panel at IMD Berlin: "Mineralstoffprofil groß". They test Mg, Se, Zn, Ca, K, P, Chrom, Cu, Mn Molybdän, Pb, Cd, Ni, Hg in whole blood for round about 60 €. It's a good price. Concerning your kidney, you might want to test "Cystatin C". It's a pretty good marker for kidney function.

 

[NotThisGuy]

@Markus83

The reality is that first of all they always send you to the psychatrie before they rule anything out. (as long as standard blood panel isn't alarming)

Cystatin C sounds like a good idea. I will ask my GP about it.

After all I've read about heavy metals I prefer to do it Cutler style.
My experience with Docs are that everytime I'm reacting negative to their treatment they blame it as psychological issue.
Don't know if heavy metals in whole blood are any reliable.

Made an appointment with a lab doc. for testing cytokines and common infection in CFS. Didn't know they offer something like this.

 

[Gondwanaland]

Right now I'm doing a 24h urinary copper test for wilson. We will see.....

Back in 2014 methylation supplements sent me to the ER as well. I wish they had tested me for hypoglycemia / metabolic acidosis. Instead they dismissed me as with anxiety.

 

[aaron_c]

I'm moving my answer to this to this thread because it didn't really fit with the other thread it was in.

@aaron_c
I thought ALA is supposed to get mercury out of the brain?

Cutler uses it for that purpose, but he's very specific about how to use it: He wants people to take it every...I think every four hours? so that blood levels stay above a certain level. He argues that when blood levels of ALA drop below a threshold the mercury that the ALA bound gets released back into tissues.

So a person taking ALA casually will continually bind mercury and then re-deposit it somewhere, possibly in the brain. That's what I meant when I said to be careful with ALA.

 

[NotThisGuy]

Ok, thank you @aaron_c .
I already read into cutler stuff, just want to start when my methylation block/ mitochondrial block is lifted so I can at least tolerate Vit.c and zinc again.


Yesterday happened something interesting.
Since the sun makes me feel so much better (less MCAS and depression), I tried to emulate this effect with electronics.
The IR-Lamp pointed at the liver was a really bad idea... I still have to cover my liver/kidney when I'm out in the sun.

Yesterday I was on a tanning bed for 30 seconds which uses UVA, UVB and green light (still covered my liver and kidneys with a blanket).
I tried to google green light therapy but didn't find very much. Manufactor claims it lifts depression and raises NO.
And indeed lots of things got better.
Depressionen lifted but I was still a little suicidal though. I really believe that suicidal thing is testosterone deficiency and/or liver overload.
But I felt happy after this session for the first time in 2 years. I really forgot what happiness is until yesterday.
But I dont unterstand why the sun doesn't have the same effect.

It still overloaded my liver though (had orange urine again the next morning and did feel the evening that my liver was overloaded).


Also my MCAS was better for a few hours after green light, but quickly came back.
The sun lasts a lot longer.

Also the green light solved my POTS completely!!! Sun doesn't have this effect.
So whats the light helping me with MCAS? Is it more red light or blue light?


I still hope I can lift my methyl trap/mitochondrial trap without ALA....
For now I plan to try following things:

Carnitine Fumarate (I used a lot acetyl carnitine in the past but few months ago when I retried it tended to make me psychotic)

NADH (since it's supposed to help with BH4)

SAMe (tried it a few times with little dosage, cant remember a negative effect, but also not a positive. I'm a bit scared of this one because of my POTS and breathing trouble. Dont know any antidot for excess adrenaline. I also don't know if the shift to TH1 will make my depression better or worse)

R5P (active B2). Very unsure about this one, since it could break down neurotransmitters even more, but if this is the missing ingriedient that will make my methylation and mitos work again this should be fine.

I really hope something is gonna work out, so I can start chelation with ALA (which I am very low and in the long run my body needs this to work)

If everything fails hopefully the combination of acetyl-glutathion+ ALA and green light will do it.

If this fails also my last chance would increasing CAR (maybe through Rx testosterone) and hope that Cohen is right..
He said low CAR might be the reason why people are reacting badly to supplements and medication

https://selfhacked.com/blog/constitutive-androstane-receptor/

While I wrote this I realized maybe it's a better idea to follow the CAR stuff first...

Sigh.... that life as a guinea pig...


Edit: forgot inosine on the list. It is supposed to make MCAS worse, but maybe it raises uric acid and it will act as peroxynitrite scavenger and make MCAS better in the long run.

Also royal jelly.

 

[bread.]

Hi,
Im pretty worse these days...
I have low blood pressure (for a long time), orange urine (i guess no bile flow), feel like dying, suicidal depression sometimes blood in urine, without any known cause. (i believe its nephritis), shortness of breath, anxiety.

The strange thing is: I can't take any electrolytes. Every electrolyte I try gives my overdose symptoms.
Somethings very wrong with my kidneys (and liver), but blood panels are ok, so no one cares.

I believe its low ATP (confirmed by lab) and low glutathione.
Everytime I had an ATP boost by supplements the electrolyte intolerance got better

To my history: I'm sick for about 10 years, but got significantly worse after exposure to mercury and lead.

This left me with huge food intolerance (pretty much Im eating only potatoe, olive oil and chicken breast for 1.5 years).
Alongside with histamine and MCAS. I had trouble with MCAS and histamine before, but not nearly this severe. I also have MCS.

I can't take any supplements because even tiny doses make me worse.
I used to take lots of supplements 1 year ago but stopped tolerating them after I started methylfolate, Q10 (not the reduced one) and selenium.
Mild intolerance started with methylfolate and Q10

Selenium crashed me totally. (pale, anemia, anxiety, panic, no appetite, intolerant to all supplements)

The only good phase after that, where I also tolerated supplements again was when I took B1.
Had 2 very great days and 2 good months. Then it stopped working and I was worse than before.

After that copper seemed to help for a while (could only tolerate 200mcg a day). I supplemented it for about 3 weeks and now it only makes my depression worse.
But I'm pretty sure I was deficient, because my blood levels had an slight increase in MCV and decrease in MCHC. That never happened before after my exposure to heavy metals.
Also my thirst decreased (I was drinking 6 liter water before I took copper, now Im down to 3 liter)

After the copper success I took some tyrosine, because I thought maybe low norepinephrine was causing my low blood pressure.
(again only tiny amounts). The first 2 weeks were great! Some improvement with all my symptoms.

But then suicidal depression hit me. I had to drop the tyrosine since my mood got very dark shortly after taking it. (alongside I took some copper, but not frequently and only little dosage and also s. boulardii)
I don't know which of them made me so much worse. I read that boulardii contains ALA, but that it's in a complex and doesn't get absorbed very well. Might this be why Im so much worse? Because it startet chelation?

The only thing right now that keeps me alive is the sun.

I figured it could be the IR light of the sun, which is making me better so I bought a an NIR bulb (NO SAUNA).
I pointed it on my liver for 15 minutes and that night I thought I would die.
Huge thirst that didn't went away. Brown urine, orange urine, red urine (blood).
I'm still recovering from it, that was 3 days ago.

I guess the IR made inflammation worse. Now I can't even tolerate the sun that good anymore.
Maybe im depleted in glutathione? Maybe my bileflow completely stopped? I dont know.
The sun gives me now similiar reaction like the IR-lamp did, but it improves my breathing troubles!!!! and my depression. So there is something else in the light I have to go for.

I did some lab tests and few things are concerning me:

Borderline low cortisol

low testosterone (I read that this can cause depression)

Thyroid is OK. only RT3 is borderline high

very low ALA (lipoic) levels

borderline low copper (before I started taking copper)
borderline low ceruloplasmin

borderline low zinc

borderline low molybdenum

high magnesium (went down after I took copper, still too high, but borderline high)

potassium, calcium, natrium all ok. But natrium is borderline low.

Vit. D: 24ng/ml (19-72 normal)

B12: borderline high in RBC

Iron: borderline high in RBC, but low ferritin and free iron.

low uric acid and low urea.

high bilirubin.

high IgE

high sIgA (stool sample)

methionine: 15 µmol/l (6-40) - little lowish
glutamine: 666 µmol/l (470-758)
glutamic acid: 41 µmol/l (28-92)
glycine: 289 µmol/l (120-387)
taurine: 203 µmol/l (57-228)
cysteine: 75 µmol/l ( 33-82)

All other aminocadis are lowish. The ones listed above where those I supplemented last year. So maybe thats why they aren't low.
I added the full list as PDF.

Now the question is: Why is my cysteine this high?

What is the missing cofactor to make cysteine to glutathione?
I googled and found glutamic acid, which lowish.
Now Im afraid to supplement it due increase of depression or anxiety.

Also I thought glutamine can convert to glutamic acid.

If I try to take zinc I get instant low blood pressure, anemia with breathing troubles (like my lung isn't stretching enough). This only goes away with cortison. (I take ACE but even there tiny dosage lowers my blood pressure).



I hope someone can suggest something I can do about my situation.
Thank you very much.

EDIT:
UTI is ruled out.
Also I dont think it is cancer. The kidney problems started with lead exposure.
(I had a friend with me in the room and he also has the same problems/symptoms like me, since that day)

Homocysteine: 7 µmol/l (anything <10 is ok)

Hi,

I am in nearly the same situation!

Orange Urine, cloudy, pale stools,...

I am very severe. I am from Austria.

Have you figured something out? How are you now?

 

[NotThisGuy]

Hi,

I am in nearly the same situation!

Orange Urine, cloudy, pale stools,...

I am very severe. I am from Austria.

Have you figured something out? How are you now?

Hi, well im still very sick but luckily not in such a bad place anymore.
I figured something out but obviously it might not help you but I will still write down just in case anyone else is in this situation:

Increasing meat in my diet. With severe MCAS my diet only consists of 3 foods but i think its still important to play around with the ratio of carbs/protein/fat.
My life safer back then was high carb moderate protein and low fat.
Look up the minimum of protein you need a day to survive and calculate how much meat you have to eat to reach this amoung of protein. I think to cover the minimum is very important.
I was always eating fresh chicken or turkey filet (not frozen not packaged so it has low histamine).
I gained back some weight and stability after couple weeks/months doing so.

I then proceed to take liquid and from light protected MeB12 (started with very very low dosage). and gained more strenght and also i was able to introduce very slowly a couple supplements again. After B12 I started taking l-carnitine and from there on I was able to introduce more and more supplements again. After adding carnitine I was able to tolerate more fat again which again gave me a bit of a boost.

Hope anything helps.

 

[bread.]

do you still get orange urine? do you have pale stools? how severe are you? ty!

 

[NotThisGuy]

yeah nothing changed. Im pretty much chair bound but can move around a bit. if I'm in a crash im bed bound.